There are so many wonderful Down syndrome blogs out there. Some are mothers who are photographers capturing and displaying the beauty of this journey. Others are medical doctors sharing their wealth of knowledge.

My question is, “Why do all these beautiful blogs showcase only the first few years of life?”

Each of these newbie bloggers has the same theme in common. They start with a beautiful and sentimental birth story then share the horror of receiving the diagnostic news. Then they go on to share all the "firsts" that happen because each milestone is huge. There are colorful photos and videos with sweetness written all over them showcasing sitting independently, crawling in cupboards, eating with a spoon, standing in the middle of a room on their own, taking their first steps, and finally the first word. These portrayals melt your heart and bring out such goodness and pride in the journey.

Let’s be real here. Let me ask you this, “How many blogs are you currently following that highlight 6 to 15 year olds with Down syndrome?”

Not many.

Ever wonder why? It’s because once school starts, reality starts.

Reality hurts in so many ways because it’s your first glimpse of what your child looks like in a direct side-by-side comparison to 29 "normal” peers. As a parent lots of things stick out. 1. Not only is your child the shortest in their class, they are the only one not potty trained yet and possibly wearing a poufy pull up under those clothes. 2. And the clothes they are wearing are toddler clothes because they aren’t tall enough to get out of the Mickey Mouse themed sizes. 3. And the shoes, the ones that are two sizes too big to accommodate the braces that must be worn on their feet which provide the stability needed to help your child have a chance at even remotely keeping up with their peers when walking down a hallway as a group. 4. When you go to see your child at school you have to quickly respond to questions like, “Why do they look different, what is wrong with their eyes, why can’t they talk, why does their tongue hang out?” Try answering those questions on the fly with charisma. As if these physical observations don’t hurt enough, just know those are the superficial and obvious ones. The more detailed and hurtful ones have yet to come.

For example, during your child’s first year of school you as a parent will be presented with reports and data showing your child’s delays in communication, following directions, staying on task, self-help skills, cutting, writing, coloring, running, hopping and the long list of all the things your child can’t do drags on…

From the core of your being you will have hoped that all the time, therapy, and dedication you put in to your child from the day they were born until school age would have gotten them farther than preschool - before falling behind their peers. My point is, this stuff is hard to swallow, no matter how big or small this is in your tier of importance.

And while you’re sinking into a depression realizing for the very first time just how far behind your child is, your school might also agree and share all the things they can’t afford to do to help them. That is the reality and those are the blogs that parents need to read about. Just how difficult and emotionally draining it is on yourself and your family to fight year after year for a free and appropriate all inclusive education for your child. And when I say emotionally draining, I am talking about the hours you spend reading the literature and the research, the books on how to have a successful IEP, etc... Forget reading for enjoyment. That’s the truth that needs to be shared in these blogs.

Now we all know that once your child is in school, that’s when the inviting classmates to birthday parties start to become popular. I heard from a parent this week that invited several general education students or otherwise known as “normal” kids to her child’s birthday - and nobody responded. NOBODY! Where was the blog sharing the reality of that story? My point is… who wants to mend that little girl’s broken heart? This mom will do it.

I recently had a mom tell me she is emotionally drained because she feels like she has been raising a toddler for 9 years. Toddlerhood, remember those days? That is when you did mental checks involving choking hazards every nine seconds. You would make sure there were no quarters or fingers were being placed in outlets. You couldn’t sleep at night until you checked three different times to make sure the front door was locked in case of an accidental escape. Toddlerhood was exhausting. Now, imagine doing it for 9 years straight. I envy the parents who have normal children only deal with these things for age appropriate times. Special needs parent’s deal with the mental strain of dealing with toddler behavior for decades. It’s exhausting. Where is the blog sharing that reality? I am a parent of both a special needs child and normal child and am speaking from experience when I say raising my son is without a doubt easier.

I recently had my advocate tell me that things were only going to get harder. Seriously? I truly felt like I had been through the worst of it, but as I thought about what is to come, more fears sunk in. The bike riding years and the adolescent crush years will also be difficult because time and time again your child will come to mom with tears in their eyes asking you, "Why can't I ride without training wheels or why can’t I like that person?" Who will break the news? This mom will.

Let me share when those moments arrive, that's when you will realize that throughout all these years, the confidence you have given your child to tackle the world just might not be enough. They will soon realize they are different, they won’t fully understand why, and for reasons beyond their ability some things just won’t happen for them and there isn't a darn thing you can do a thing about it to ease their pain. Where are those blogs? Therapy sessions verses playdates. That is one I still am dealing with. Summertime hits and the world takes a breather while my little girl only works harder. All so she has a remote chance at starting the next year close to where she left off. It’s not fair and it hurts like heck to see your child have to work so hard at every.single.thing. they do.

The empty nest fear still frightens the daylights out of me. Have you been to the grocery store lately? You don’t see a Down syndrome adult shopping alone. Many are tagging along right next to their parents. You see them anywhere from 30, 40, to 50 years old. Where are the cute blogs when your child is 36 years old, still living with you, needs reminders, meals, is missing out on college, house buying, marriage, children, and so on. I know there are new and different services available out there, but the reality is even at 50, this mom will still be the one writing the check for the services they need. Where are the narratives telling me how beautiful that part of the journey is?

And then there is goodbye. You know a parent's worst nightmare is having to say goodbye to their own child. I will have known life before my child and will have to learn to live life without my child. It chokes me up every time and takes my breath away but the reality and research has time and time again stacked those odds against me proving that the likelihood of this happening is extremely high. I do understand the risk of any child passing is a risk, but when odds predetermined and pick your child, the journey isn't as carefree and beautiful as initially portrayed. Unfortunately, that cute little happy blog your following, enjoy it while you can. It hurts, every day hurts, and the pain of this reality never really gets any easier for both my daughter or myself. There is a saying floating around Facebook about walking a day in my shoes, and not many people would make it. I wouldn’t wish this journey on anyone else.

I know my blog may be viewed to some as hurtful. It is raw and I can tell you I am as truthful as they come. I know I will offend many people by expressing my fears, but it is also my hope to serve as the voice for many more that are too scared - or ashamed to share.

And that part, I am proud of.

You can criticize my viewpoints, in fact, I welcome hearing your perspective, but you can’t change the reality that I personally face on a day to basis. I do realize not everyone’s story is the same but this story is mine…..my story…. as it unfolds…on this very day. Tomorrow may be brighter but in the meantime I wanted to share with the world the darkest hours and what spins in this thick brain of mine.

Now, I promise you, I am not an entirely pessimistic person. I always try hard to share the bad followed by the good.

And the good is not just good, it’s breathtaking.

While the reality my family faces isn't always beautiful, my daughter, Maddox Lucille, now she is beautiful. And she is worth every last lingering bit of fight I have in me to give her a chance at succeeding at school, being invited to birthday parties, living on her own, and surpassing the medical odds. She has no choice but to succeed in this world because she was born with my passion and determination.

And yes, I promise to blog the entire journey throughout the good, bad, and beautiful. You bet I will continue to share my story with utmost passion and honesty and I hope those traveling a different journey will be respectful of that. Thank you for taking the time to listen, appreciate, and attempt to understand as I share today’s fears with the world.

Maybe we have just had a good run but after 3 years of school things are pretty good. Miss T thrives there and is achieving in her own way with her own curriculum. I don't expect her to do what her peers do. We keep up her reading during holidays but otherwise she has fun and relaxes. She gets invited to parties and kids come to her parties. People with DS in our town do shop independently, some work in town and they are part of our community. Our first few years were full of medical issues, tube feeding, heart surgery, sleep challenges but now it's getting better as she gets older.

We have our challenges but overall I love our life. We have fun, we play, sing, laugh, fight, argue, negotiate, hug. She is getting to an age where we can do more together and it's great!! She is my 4th girl so i know that hormones etc are going to be challenging but I see a child achieving confidence, independence and loving life.

I'm not sugar coating it. It would be great for her not to need a CPAP machine, to not be on thyroid and reflux meds, and to be able to understand her speech easily but these things are pretty minor really. Life with my child with DS is good :-)

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Jessica

6/4/2014 12:19:54

Good points... and God Bless your Journey Karyn

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Anne

6/3/2014 23:59:01

My son is 26 years old. I felt all the sadness that you are feeling about my son Christian not attaining the milestones when others without disabilities did. Then I realized that Christian was fine with who he is and with the extra help he got. He did not compare himself to others so why should I? As it turns out, he is a well-adjusted, confident young man. He has gone to College (a special program for individuals with intellectual disabilities) and now works part time at Barnes and Noble (with a job coach). He is involved in our community and is an usher at our church. Of course his achievements are a result of hard work on the part of his family, his teachers and therapists, and now the agency that continues to support him.

Parker is nine and I'm still blogging. I try to keep it as honest as I can. Parker was born with intense health issues that have kept him behind his peers in educational endeavors. He is trached, has a g-tube and is going in for his upteenth surgery on the 24th.

We have mountains of medical bills. We are still buying diapers. I've pretty much put my on hold as I try to make his the best it possibly can be.

I am thrilled beyond belief to be his Mama.

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Jessica

6/4/2014 12:23:09

I am so happy this family has come into our lives, and even happier that my daughter, Annabelle, has a friend named Maddox! She will no doubt teach Annabelle (and her mommy and daddy) lots about life. love, and determination. We are so proud to call you our friends!!

My girls are 7, almost 6, and 4, and I still blog. I had a mixed reaction to what you said about the "realities" of school. Our administration is a PIA, but the teachers, kids, and other parents have been great. Masha has been to lots of parties. Every kid is different though, and with my daughter Kimani everything is hard. I don't write only about my girls and Ds, but I do write the the truth (as I know it) whenever there is something to talk about.

I do wish more parents would continue blogging as their children get older. I miss hearing about those babies who are now school-age. I think though that if a blogger started writing just to capture the journey, they tire out after a few years. And they also realize that Ds just isn't a big enough deal to keep them writing often enough to justify a blog.

Huh. I wrote a post about this last year and I think it's interesting that our conclusion are TOTALLY different. You think it's because parents don't want to talk about it? Interesting.
I just thought it's because parents are over Ds being a big deal, they don't have much new to add and/or they may be blogged out in the same way everyone who starts a blog when their child (with or without Ds) can get blogged out when the newness fades and they are not in the habit of journaling.
Here's my post - there were some great comments on it too, by moms of older kids, including ones who DO blog:
http://www.withalittlemoxie.com/blog/down-syndrome-blogs-and-why-are-there-few-blogs-by-parents-of-older-kids/

I guess I skipped the blog and just wrote the book! Who's the Slow Learner? A Chronicle of Inclusion and Exclusion" and I didn't leave out the bad parts...that's the 'exclusion'
I do have a blog, but it's mostly to support parents fighting for inclusion when there's 40 freaking years of evidence that it's better than exclusion...OH, and you will find my (20 year old) son shopping alone. With his ATM Card, or cash if he went to the ATM by himself...the second book 'Adventures in Independence' will be the one that gets me picked up by Child Protective Services...so I'm waiting till the statute of limitation is up...

Your post made me sad. I am sorry that this is the experience you or your friends have had, but for me, I've been blogging for 7 years now about my daughter, who just turned 8. I have definitely slacked off this year and went from 4-5 posts per week over the years to *maybe* one per month, but that's because a) our lives are incredibly boring, and b) I honestly don't have time. My mornings, evenings and weekends are all spent enjoying my daughter, loving her company, having conversations with her, going places with her, *learning* from her, loving our lives. I just don't have time or residual energy to blog much. My blog has never solely been about the "rosy" side of Down syndrome, and I have tried to be honest about the difficult times. There have been plenty. But perspective shifts and changes as my daughter and I grow, and our lives are our lives, they're just the way they are - Down syndrome plays a very, very small part in our lives, comparisons to typically-developing peers become fewer and further between as we acknowledge the differences and stop trying to *make* her be someone she isn't, her challenges or shortcomings are something to be overcome in the most graceful and productive ways we know how, my fears are less and less every day as she shows me what kind of person she is and how fulfilled our lives are because of her. Blogging stops because life is busy, not because it's depressing.

Yes, there are blogs that seem more upbeat and rosy about life with Down syndrome. Mine isn't one of them. I talk about it all, especially my son's struggle with speech and my worries about school as he is entering Kindergarten next year. I would venture to say that life does change as children get older and the constant pain/grief/anxiety that a parent may have had in the younger years is less likely to be there. I personally have found ways to cope that don't require me to constantly spill my guts. I think everyone deals with their personal situation in a way that works best for them. Some people write about it, others don't. I've read people's stories in groups on Facebook. Just because they aren't blogging about it doesn't mean it doesn't happen, but maybe blogging isn't the medium they chose to use as their child(ren) gets older.

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Missy

6/5/2014 03:33:47

Here are some of the teen/adult blogs I follow. Keep in mind a portion of teen parents are in the 35-55 year demographic right now and were not part of a generation of bloggers. In the 45-55 year old group I'm quite sure some of them still struggle to post photos online, let alone start a blog. http://yomammamamma.blogspot.com/2012/03/blogs-by-and-about-teens-and-adults.html

I have two girls who have Down syndrome. They are 10 1/2 and 11. I've been blogging for 6 years about them and also their 5 other siblings. I mostly use my blog as a virtual baby book for me and a way to share my life with my 7 uniquely enhanced children to whomever chooses to read it. I blog about our lives in general, Down syndrome, autism, adoption and anything else that strikes my fancy. I post cute pictures, medical stuff, silly stories, milestones, the good, the frustrating and the hard stuff. I may write several posts in a month or go a month without a single post. It's more about how busy my life is with 7 children than fear of posting the hard stuff. Lately autism has taken the forefront of my blog mainly because I have 4 children who have it. I do decide what to share and what not to share to the masses....partly for my children's privacy (my teenagers prefer me not to constantly blog about them), partly to not change people's perception of my children because of something "gross" they did that is part and parcel of their diagnosis/disability and partly because some of it is just plain boring. I still love sharing their sweetness, their beauty and my undying love for them, but I also share about their stubborn personalities, delays & behaviors as well.

I do not have a child with down's syndrome but your post resonates with me for other reasons. thank you for being so honest. you are 100% spot on. I have one small suggestion. consider approaching the class mom or teacher and ask is you can have 5 mins to address the parents at back to school night. You may be able to reach a few moms who would we willing to include your daughter in parties, etc. UGH just thinking of these issues brings back so many hard memories.

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Hwey

6/19/2015 16:33:15

Hi. I thought children with Down Syndrome attend schools meant for special needs children. At least this is what happened here. They do not attend regular schools because they will not be able to keep up with pace of curriculum. If children with DS attend special needs schools, they will be more confident of themselves and parents will be less stressed about their children being different:

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Why blog?

These are personal realtime reflections that we have opted to share openly and honestly so you and others can learn about our journey.

Click on January 2010 below to read Maddox's birth story and view photo's of her birth-day.